Practice question

How can I involve carers and families in the care of their loved ones?

Relatives and informal carers experience difficulties when seeking to engage and collaborate with health professionals, as demonstrated in last month’s Research focus (Nicholson 2016). Hospital stays, outpatient visits and new admissions to residential or nursing homes can all be a stressful time for carers (Princess Royal Trust for Carers 2011).

Relatives and informal carers experience difficulties when seeking to engage and collaborate with health professionals, as demonstrated in last month’s Research focus (Nicholson 2016). Hospital stays, outpatient visits and new admissions to residential or nursing homes can all be a stressful time for carers (Princess Royal Trust for Carers 2011).

Relatives, friends and carers now commonly wish to remain involved in their loved ones’ physical and psychosocial care. Our duty as nurses is to facilitate this wish (Nursing and Midwifery Council 2015).

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Initiatives such as John’s Campaign for the right to stay with people who have dementia in hospital, at johnscampaign.org.uk, have resulted in most trusts applying this principle to relatives and friends involved in providing care. However, nurses may perceive relatives as stress-inducing (Walker and Dewar 2001). This perception may be compounded by prescribed visiting times and influxes of visitors all at once. In my clinical experience, open visiting times encourage a more sustainable ‘trickle’ of visitors, preventing staff from becoming overwhelmed and visitors from becoming annoyed while waiting for updates.

Many important decisions and most consultants’ rounds and multidisciplinary team meetings take place in the morning. Often, the plans state ‘speak to next of kin’ or ‘notify carers’. If these relatives and carers were encouraged to be present where possible, it would be much simpler for everyone and hopefully result in better outcomes.

That said, any potential carer partnership requires a foundation of ground rules if power is to be equally shared and respected by all parties.

One example I have seen work well in practice is from an engaged nursing team who, when carers ask about visiting times, reply: ‘2pm to 8pm, but if you are helping [insert name] to eat and drink or caring for them in any way we would be happy to see you at any time. We may ask you to step out if another patient is receiving care or seeing the doctors.’

The important message in this approach is that nurses have overall responsibility for who comes and goes from the ward or unit, and that visitors may be asked to step out if it safeguards the privacy and dignity of other patients.

What this message does not say is: ‘I am in charge and you are welcome when I say so.’ None of us wants to convey that message in our interactions with respected partners in care.

This same team offers a hot meal to any visitor who is served at the same time as the patient as they recognise the importance of social eating experiences (Paquet et al 2008). They also often arrange for relatives to stay overnight if they want to be near their loved ones.

There are some important factors to consider when working with relatives and friends to provide care. Fatigue in informal carers is a well-established risk to effective care and stable social situations (Teel et al 1999).

As professionals, we must ensure the welfare of all who we engage as partners. Most carers will see a hospital admission as an unwelcome break; it is a break nonetheless. Many will draw solace from the fact that they can recharge and catch up on sleep, helping them to prepare for the hard work when their loved one returns home.

Equally, some will feel stressed that their own situation and role have changed so quickly and so significantly.

Another important factor is that most informal carers know much better than we do how to care for the person who has now become our professional responsibility.

Sound clinicians are required for skilled clinical tasks, but most patients need love, reassurance and familiarity, which are not tasks. So, ask yourself if you are best placed to meet those particular needs and, if you are not, who is?

A final important consideration is patient choice. Most patients want the comfort of a loved one to aid them through their stay, but some will not. Whatever the reasons for this choice, they should be respected.


References

Nicholson C (2016) Research focus: involving carers and families in the care of their loved ones. Nursing Older People. 28, 3, 14.
Nursing and Midwifery Council (2015) The Code: Professional Standards of Practice and Behaviour for Nurses and Midwives. NMC, London.
Paquet C, St-Arnaud-McKenzie D, Zhenfeng M et al (2008) More than just not being alone: the number, nature, and complementarity of meal-time social interactions influence food intake in hospitalized elderly patients. The Gerontologist. 48, 5, 603-611.
Princess Royal Trust for Carers (2011) Supporting Carers: The Case for Change. PRTC, Essex.
Teel C, Press A, Lindgren C et al (1999) Fatigue among elders in caregiving and noncaregiving roles. Western Journal of Nursing Research. 21, 4, 498-520.
Walker E, Dewar B (2001) How do we facilitate carers’ involvement in decision making? Journal of Advanced Nursing. 34, 3, 329-337.

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